A tongue cancer patient shares what brought him through aggressive cancer treatment

Gary and Penny Nally

A 56-year-old husband and father, Gary Nally supervises maintenance at Alliance Coal mines north of the Ohio River, so he sought treatment for a cold and a sore throat from the company nurse at the Princeton, Ind., mine where he has an office. When the antibiotic given did not help, he visited his family doctor and was prescribed steroids, but the sore throat persisted. Suspicious that something more was wrong, Nally visited the nurse again and she made him an appointment with an ear, nose and throat specialist in Evansville, Ind.

“They did a CAT scan, and they diagnosed it immediately,” Nally remembered. “Of course I was terrified, scared. It was Stage IVa cancer [advanced tumor with nodes in the neck] in the back of my tongue on the left side.”

A cancer without a lot of warning signs

Looking back, Nally noted his ear had begun to hurt when he ate, but other than that and the sore throat, he had no other symptoms. UK radiation medicine specialist Mahesh Kudrimoti, MD, said most of those diagnosed with this cancer only find it at an advanced stage – many still not experiencing symptoms.

Nationally, one in 324 men and women will be diagnosed with cancer of the tongue during his or her lifetime. In 61 percent of the cases, the cancer will have spread beyond the primary site before it is detected.

Patients look for highly specialized care

And because the cancer is advanced, patients need to travel to regional medical centers to receive the aggressive treatment regimens required. Nally’s insurance would have allowed him to go to UK, Cleveland or St. Louis. He chose UK because it was closest to home.

Like most cancer patients who seek care at the UK Markey Cancer Center, his first stop was to see a surgeon. Nally met with Joseph Valentino, MD, a specialist in head and neck cancer surgery. The year prior, Nally had had a stent put in his heart, and as a result, was taking the blood thinner Plavix. Dr. Valentino sent him home to get off of medication for a week prior to surgery. While home, Nally’s throat began to bleed badly and he began spitting up blood.

“We had to go to the hospital in Evansville,” he remembered, “and they didn’t have a clue what to do. They were giving me ice and cold water trying to get this blood to stop and it wouldn’t. They couldn’t put me on a plane because the weather was so bad, so they put me in an ambulance and took me back to Lexington immediately.” Valentino performed surgery right away to stop the bleeding.

Given the news that he would have to start radiation therapy, Nally and his wife, Penny, got a room in Lexington and met the trio of doctors they would come to depend upon.

“Dr. Valentino was my main doctor, my ear, nose and throat specialist. Dr. Kudrimoti was my radiation doctor, and Dr. Arnold was my chemo doctor. And all three of them were just absolutely excellent.”

All multidisciplinary care is not the same

The three specialists and their teams meet once a week. “Every Tuesday morning they would have a meeting,” he said, “and when it came time for Gary Nally, they would sit around and talk about me….should we do this, should we try this? I felt better knowing it was a team rather than just one person making a decision.”

Nally was hospitalized a couple of days after the bleeding episode, got out of the hospital and had a PET scan, and then started radiation. His treatment plan called for 35 radiation treatments and three rounds of chemotherapy.

Calling those who go through this special regimen “the bravest of the brave,” Susanne Arnold, MD, views this treatment for tongue cancer as more intensive than what is required to treat many other cancers.

“Other cancer patients undergo chemo and radiation at the same time,” said Arnold, “but this is right along the aero-digestive tract and all of your nutrition, all of your speech, all of your airway protection is involved by that organ in the head and neck. And if you’re treating that area, you have to deal with side effects that affect swallowing, nutrition, breathing, speech and all of the bodily functions that happen with your mouth.”

“Mr. Nally always came back to clinic saying, ‘I’m ready for more,’” remembered Dr. Arnold, “which was amazing because he had a lot of side effects, but he really wanted to follow the treatment plan. Sometimes we have to say to people, ‘I don’t think you can tolerate the treatment plan. We have to slow down. We have to take a break.’”

Regrets

When Nally started radiation on Feb. 7, he weighed 157. Dr. Kudrimoti suggested he have a feeding tube inserted to ensure he could still get the nutrition and liquids he would need to keep his body strong for the course of the seven-week treatment regimen.

“I refused because my grandmother had one and I remember seeing it and it reminded me of the end of time. So I wasn’t going to do a feeding tube.” Nally’s attitude was consistent with that of most patients – only 20-30 percent agree to a feeding tube up front, estimated Dr. Kudrimoti.

Nally regrets not taking the advice of doctors, family and friends on this point. By the time radiation treatments were finished on March 30, 2011, he weighed only 134 pounds.

“The doctors had already told me I was not going to make it if I didn’t get the tube put in. And I learned a lot about food and eating and nutrition – about how things are robbed from other parts of your body that is trying to heal some other part. So April 1 I went ahead and got the PEG tube. The PEG tube was the smartest thing I ever did and I wished I’d did the PEG tube to start with. Had I done it to start with, I probably would have healed quicker and faster and better, and I probably wouldn’t have struggled quite as bad.”

Recovered, and surviving

Gary and Penny Nally went home to Indiana a year ago on April 4, 2011, and Nally was able to start back to work slowly, working two or three hours at first and then gradually working up to a full-time hours by August 2011.

“It is a very slow recovery. I thought I could be better faster than this, but it’s just a tremendous slow recovery. I still struggle with my saliva glands, I don’t have them back yet but they’ve gotten better. I’m trying to eat more and put on weight.”

Dr. Valentino took the PEG tube out in January of 2012 once Nally proved he could maintain his weight. “Gary is in the home stretch; he’s doing very well,” says Valentino. “I tell every patient, ‘I pray you have five years of unnecessary office visits with me,’” and enjoys being able to say, “You didn’t need to come today, everything’s fine.”

“Usually we don’t like to say a patient has beaten the cancer until we are five years out,” explains Dr. Arnold. “Gary has a ways to go, but so far things have been very, very good.” Nally will have regular PET scans and follow up visits to watch for any recurrence.

This isn’t the first time Nally has faced cancer. Almost four years ago he was diagnosed with prostate cancer and sought treatment at another center. “But that hospital is extremely, extremely busy,” observed Nally. “UK is extremely busy also, but even though they’re busy, they all made me feel like they had my best interests at heart.” He tells of waiting to see Dr. Valentino but no matter how far behind he is, “when it’s your turn he gives you as much time as you need.”

ENT surgeon Valentino made a conscious decision 12 years ago, “I will take care of the person in front of me,” he said to himself, “and do whatever that person needs at that time and the rest of the world will just have to wait. My regular patients all know that if they wait, I’ll be there for them as long as they need me.”

Nally felt the extra attention given by each member of the team. “Every one of them have been superb to me,” he added.

“Patients feel the love we have for them. And I’m not afraid to say that’s what it is, love of the patient. Some people think that’s pretty corny. We all do love them, and this is how we show our love and respect for them. We walk the path with them wherever it leads,” commented Arnold.